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(ARA) - No one wants to be a statistic. But Megan Shaughnessy almost became one of 17 patients who die every day in the United States while awaiting an organ transplant. She began feeling sick in September 2000. After a month of trying to figure out what was wrong, doctors found that her liver was failing due to an autoimmune disease. “I was immediately put on a transplant list as a “status 1” - the status reserved for those with a life expectancy of seven days,” she says. After an eight-day wait, the 23-year-old San Francisco resident received a liver from a 16-year-old girl. “I am so grateful to my donor family,” says Shaughnessy. “I had no other options besides a transplant.” She now helps educate others about organ donation through her work as a placement coordinator with the California Transplant Donor Network.
Shaughnessy is often asked about myths and fears that people have about organ transplantation, such as whether race or socio-economic status play a role in how organs are assigned. Her answer: “If you lined up 100 people who got transplanted in the past year, you would see different ages, different races and different diseases represented,” she says. “People like you and me get transplanted all the time.”
Since 1954, when doctors successfully performed the first human organ transplant, the lives of more than 400,000 people in the United States have been saved by transplantation. It is the leading form of treatment for many forms of end-stage organ failure. With this success, however, has come increasing demand for donated organs. Today, more than 86,000 people are awaiting transplants nationwide.
“It is important for donors to understand how the system works and be assured that organ sharing policies forbid favoritism based upon ethnicity, gender, religion, political influence or financial or social status. Sharing is based upon medical and scientific criteria,” says Walter Graham, Executive Director of the United Network for Organ Sharing (UNOS). Under the Organ Procurement and Transplantation Network (OPTN) contract with the federal government, UNOS maintains the nation’s waiting list for deceased donor organ transplants.
Here’s how the process works. When a person’s physician determines that an organ transplant may be necessary, the patient is referred to a transplant center for evaluation. The medical team at the transplant center determines whether a patient is a good candidate for transplantation; if the answer is yes, the patient is then added to the waiting list.
When a deceased organ donor is identified, a transplant coordinator from an organ procurement organization accesses the computerized OPTN matching system. Each transplant candidate in the pool is matched by the computer against the donor characteristics. The computer then generates a ranked list of patients, based on factors such as tissue match, blood type, medical urgency, immune status and the distance between the potential recipient and the donor.
Because of the number of variables that are considered and the ongoing shortage of donated organs, some patients may wait for many years before they receive an organ transplant.
Louise Miglin was sick for 10 years before she received her liver transplant, even though, as in Shaughnessy’s case, the only treatment for her condition was a transplant. “I had polycystic liver disease, which was diagnosed in 1991,” explains Miglin, who lives with her family in the San Fernando Valley in California. Multiple cysts had turned her liver into what she describes as “Swiss cheese, or a sponge,” with her liver growing to 20 times its normal size. However, in between the cysts, she had functioning liver tissue, so her labs were within normal range, meaning for many years, despite acute discomfort, she didn’t qualify as a transplant candidate.
“For years, I felt like women feel in the last few weeks of pregnancy,” says Miglin. “I couldn’t sleep lying down, I could only eat small amounts of food, and I even looked pregnant - I was wearing maternity clothes.” When she started to suffer shortness of breath because her liver was pressing on her diaphragm, her activities of daily living started declining, and she had to take a leave from her job as an intensive care unit nurse. She was put on a transplant waiting list in February 1999 and was transplanted in March 2001. Had there been enough donated livers, perhaps she would have received her transplant earlier.
“I spent 25 months on the waiting list - two years, one long day at a time,” says Miglin. She had long talks with her kids, preparing them in case she didn’t get a transplant in time. She carried a beeper with her 24 hours a day and couldn’t travel more than two hours from her transplant center. “I was so excited when they were taking me to the operating room on the gurney,” she says.
Both Shaughnessy and Miglin urge people to consider organ donation. “I can’t think of a good reason not to be a donor,” says Miglin. “Even if you think you’re not healthy enough to be a donor, let the professionals decide.” She also notes that in her work as an ICU nurse, she saw situations where possible donors had not discussed organ donation with their families. “Let your family know that you want to be a donor, she urges. Thousands of people, like Megan and I, are counting on you to save their lives.”
For more information on organ donation, contact UNOS at www.unos.org.
Courtesy of ARA Content
